Australians living with a type of Motor Neurone Disease (MND) will have access to a new cheaper treatment through the Pharmaceutical Benefits Scheme (PBS).
From October 1, Tofersen (Qalsody®) will be listed for the first time for the treatment of MND patients with a form of Amyotrophic lateral sclerosis (ALS).
Around 2,800 Australians are estimated to be living with motor neurone disease and ALS is a particular disease accounting for up to 90% of MND cases.
ALS is a progressive neurological condition that damages the nerve cells that control muscle movement. Over time, this can affect a person’s ability to move, speak, swallow and breathe, leading to increasing disability and loss of independence.
Qalsody is a targeted treatment for patients with a rare genetic form of ALS. It works by reducing the production of SOD1 protein and offers a new treatment option for patients with limited existing therapies. The treatment may slow disease progression and help patients maintain function for longer.
Around 70 Australians are expected to benefit from this listing each year. Without PBS subsidy, it would cost patients up to $28,600 per script.
This is the second treatment for MND listed on the PBS under the Albanese Government, on top of the establishment of the Neale Daniher National MND Clinical Network, giving more people with MND access to treatment trials.
PBS listing means eligible patients will pay a maximum of $25 per script, or just $7.70 with a concession card.
Quotes attributable to Minister Butler:
“MND is a heartbreaking insidious disease that Australians are all too familiar with.
“The listing of Qalsody for ALS on the PBS is a gamechanger for Australian patients.
“With every investment the Albanese Government makes in new research and treatments for MND, we hope to honour the great legacy of Neale Daniher.
“That is why our Government recently committed $40.1 million to establish the Neale Daniher MND Clinical Network – to strengthen our efforts to find new therapies and improve quality of life for people living with MND.
"And now the new listing of Qalsody on the PBS for patients with ALS, is also ensuring Neale’s extraordinary legacy will continue to make a difference in the lives of Australians living with MND.”